If you’d asked me about diabetes a few years ago, I would probably have had an opinion. I’m not known for being short on opinions on any given subject, but it feels weird, now, knowing that I would have had something to say about it then. Back then, I didn’t have diabetes. I knew people who had it. I had made films about it – I interviewed the first athlete in the UK to have a continuous glucose monitor, which allowed him to become the first truly-competitive british marathon runner with Type-1 diabetes. But I didn’t have it.
Now I do have it, and I’m still a total noob at this diabetes thing. Sixteen months since I started insulin, I feel like I know very little. I’ve had a rapid education from the @OurDiabetes community on Twitter. I’m not short on facts, on physiological understanding, on sick-rules and carb-counting cheats. But there are people out there who have years of experience for every month that I have – folk who don’t just have 10,000 hours (I’ve got about 11,500 now myself) of diabetes experience, but have hundreds of thousands of hours of experience of dealing with diabetes.
There are only a few things I *know* about insulin-dependent diabetes (I’m avoiding saying T1/T2 etc because I myself have a weird variant that is like T1 except that I still make a little background insulin):
- Diabetes is like a game where you can never ‘win’ – you can only draw even, at best.
- If you stop playing the game, even for a few hours, you can get sick and/or die, irrespective of how important the thing that made you stop playing is.
- There are hundreds of rules in the game of diabetes, but we only know about 50 of them and we can only work with about ten.
- Sometimes the rules change unexpectedly, and no two of us have quite the same set of rules.
I’m lucky: I have the tools, the circumstances and the understanding to work with the factors that I can change. I have the diabetes community’s support on hand 24/7 via twitter. They were there when I had the first day on which I couldn’t be bothered to test. They will be there if/when I get my first probable-complication. I listen to others talk about what it feels like to have lived with it day-in, day-out for a decade, what it’s like to have the scary letter after retinal screening, what it’s like to have a new medical problem and wonder whether it’s your own fault, for not having played the game hard enough. I don’t know what it’s like to be those people, but I do know that the support that we give to each other has a special quality because we all, literally, have Skin in the Game.
(The term Skin in the Game is used to mean that one has something real at stake – it is often used in a financial or gambling context, meaning that someone has staked money (an amount not trivial to them), but the origin is probably Shylock’s demand for a pound of flesh from the loan guarantor in Shakespeare’s The Merchant of Venice.)
The peer-support conversations and discussions I have with fellow patients are invaluable. Nourishing, challenging, comforting. Recently I’ve come to realise that the conversations and discussions I have with HCPs on twitter can be equally wonderful, or they can be destructive. The destruction isn’t intended, nobody’s intentions are bad, but there is a communication gap known as The Arousal Gap (thanks @trisha_the_doc for that one – pro tip, don’t google it, no, really, don’t):
what is to a HCP interesting and important in a theoretical way (or perhaps boring and routine), is usually much, much more important to the patient.
The ‘simple’ wrist fracture that the nurse or orthopod barely raises an eyebrow at is anything but simple for me – it means twelve weeks of being unable to drive, walking 5 miles to the nearest bus stop to catch an every-two-hours-at-best bus, negotiating lifts and help with simple tasks with friends and family, not being able to lift the dog into the bath, not being able to cook my ‘normal’ meals, halving my work hours and thus my earnings… does that sound simple?
So it goes with a version of this on twitter. The imbalance of theoretical discussion, perhaps even having a stake in terms of time or earnings, versus having actual Skin in the Game. When we bring to the conversation our broken bodies, and the needs that their inadequacies generate, we bring great vulnerability, and the robust debate or questioning that we would enjoy in other circumstances can feel shaming and callous, even when we know that the intentions are not unkind.
My new self-care plan is to no longer expose myself in discussions where other participants don’t also have skin in the game except under really specific circumstances. Tweetchats with fellow patients are often enhanced by respectful participation by HCPs, aware that their technical knowledge is not the same as lived experience, and that at the end of the chat they will no longer have to think about diabetes for a while, unlike those of us who end it by testing and fixing our blood sugar, for the nth time that day, perhaps setting a 2am alarm because we need to correct, or putting that biscuit back in the packet because we can’t risk it.
My corresponding be-less-of-a-dick plan is to try to hold back my (loaded, smart-arse) questions and my opinions when I’m not the person with Skin in the Game. To be more sensitive to how exposed other people are in a discussion and not just wade in because I find it ‘interesting’.
Do what the old-timers do
Almost 10 years ago, I got sober by hanging out with other people who had also been drunks and were now able to live functional lives. The message from the first meeting was clear: spot the people who you want to be like, the ones who are surviving in a way that you think works, and find out how they do it. Be honest with them about your struggles, and be prepared for them to be honest with you in their response. If they’ve got fifteen years of sobriety and you’re still struggling by an hour at a time, assume that they know something that you have yet to learn. Arrogance got you into this mess, and only humility will get you out.
Arrogance didn’t give me diabetes, but it could lead me to burn out, poor management and acute and chronic complications. By far my best chance of living well with diabetes is to find people who are living well with it today and have more years of experience than me, be honest with them about my struggles and be prepared for them to be honest in their response. Weekly, on a Tuesday and a Wednesday, I’m grateful that there are so many people with so many hours of experience of having skin in this particular game.
To be clear I’m talking about literal Skin in the Game here. Risk of financial hardship is not the same as risk of losing a kidney (though the second may lead to the first). Being upset by a patient calling you a rude name is not the same as being treated callously by medical staff when you present in a suicidal crisis. Being kept waiting by a patient, and thus running late, is not the same stress as being kept waiting by a doctor about to tell you whether your life is going to be cut short by a horrible disease. Yet frequently I see these kinds of responses, plus the ubiquitous “not all HCPs…”, to patients discussing the distressing experiences of themselves or their peers. There is no meaningful average of HCP behaviour or hospital experience, and there are no analgesic or healing properties to knowing that some patients are unable to manage themselves within behavioural policy boundaries. (I’ll be honest: when I hear tales of shouting, abusive patients I instinctively wonder what set of kafakaesque NHS loops drove them to the edge of reason.)